My daughter who is 13years old and profoundly disabled from an undiagnosed neurological condition.
She got a Tracheotomy when she was 7yearsold due to the shape of her jaw and struggled to breathe. The trachi really improved her breathing but after several chest infections at 8yrs old drs said she was in respiratory failure.
She also can’t move at all, has sever curvature of the spine, is tube fed and since March has been sleeping more and more. Since September her oxygen requirements have gone up and up. But no infections. Needing 1-3 litres most of the time and 7-15litres at other times for the past 4 weeks
Last week she was need 10litres to keep oxygen levels at 89% but I’ve discovered this week it doesn’t really matter how much oxygen above 3litres I give her It doesn’t change her oxygen saturation’s.
3 weeks ago a nurse had set her oxygen machine up incorrectly and within 2-3 minutes her oxygen saturation’s where at 25% and she hadn’t even woke up to try and breathe. (Monitor had alarms turned off) dnr also in place. But she was bagged to bring o2 levels back up.
Dr said today she’s lost her respiratory drive. And that given her quality of life we should consider removing the oxygen and that she would pass away peacefully.
Is this true? Would it be peaceful??? She doesn’t waken up much but she does open her eyes slightly at least for a few times during the day. She doesn’t really cough or choke anymore but can at times.
I really really don’t want her to struggle to breathe if the oxygen is removed, she is so strong, she has came through so much and although she just sleeps it’s hard to know when is the right time to say it’s the end. She actually looks quite well and peaceful whilst she’s sleeping, but on the other hand she never really leaves her bed or wakens enough to have much of a quality of life.
Also she’s on morphine patches, she does appear to have some pain when awaking but possibly from laying so much.
I just wonder if her oxygen saturation’s are between 86-91% and it doesn’t matter how much oxygen she gets how long will she survive. Would waiting to a chest infection set in make it worse for her? Does losing your respiratory-drive really mean you just slip away. All your knowledge would be so appreciated. Thank you
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MissyMe2
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I’m so very sorry to read about your daughter but nobody on here is medically trained to be able to give you advice on oxygen withdrawal. I personally wouldn’t know what to say but l do certainly sympathise with your predicament.
I just want to send love and hugs to you and hope you can and will make the right decision at the right time.
Oh I'm so so sorry, our prayers and hugs are with you both xx in all honesty I'm not sure and I can't imagine how difficult it is for you. At my son's school (he has disabilities, non verbal, learning difficulties etc) there are some children who use oxygen and one of his friend's last year passed away, a little girl who's oxygen was very low.Her parents were telling me she was very peaceful and they were with her the whole time.
But I'm afraid I do not know all the details as I really didn't want to ask any questions. I know it sounds a little basic but I guess there's lots of info online.
I'm so sorry I can't help more and I just know that you'll always do your best and what you feel is right. Much Love xx
All my prayers and love are with you all. Bless her. Xx
I went through this with both my wife, who had lung cancer, and my son who had a massive stroke and was in a coma. There comes a time, when you know youself but find it very very hard to accept, that nature should be allowed to take it's course. I'm 86 now and just hope that there is someone around to take that decision on my behalf when the time comes.
Thank you everyone, I know this is no life for her at the moment just laying in bed day and night and it's not going to improve. It's just hard to make it so final. We will hopefully get through Xmas and maybe as the days go on the answers will get easier. I find it hard because she is suffering less than she has in the past. No coughs or chokes just sleeping ....
Sending hugs and strength your way in help maybe things improve for you all hope your holidays are good ones and we're all thinking of you and your daughter and your family bless you all
Your experience and present situation is truly heartbreaking and we all feel for you.I had to make a similar decision some years ago but it was not easy.
Firstly I would like to say how hard it must be for you to make the right decision and wanting the best for your daughter and not seeing her struggle at all my heart goes out to you I'm soo sorry to even hear about it I'm list for words I can't say hiw you feel goes I haven't experience it I'm 37 years old with tons of illness and borrowed time and can't bare to think how a 8 year old is feeling but can say if you make the most with her and I'm sure you will make the right choice please if there is anything else I can do or offer text me as this is the painful time for both parents may God bless all of yous and give you courage take care
I'm thinking of you and your family may God bless her and you and your family find peace as I can't imagine how your feeling know of by thought of it I list a brother and my father uncle and 2 of grand parents in 3 years ago it's so painful not having your love one there may God bless you and your family take care
I am very sad to read you terribly difficult situation. I have two girls and I cannot begin to fathom what you are going through. My heart goes out to you.
I was wondering if you have a hospice team? I have a friend who is now under hospice care and he told me how they offer care by a team of professionals who have knowledge and experience in various disciplines, such as doctors, nurses, social workers, therapists, psychologist and home help aid. They keep him comfortable when he can't breathe and he has pain which is also controlled. His family also receive counselling and work closely with the hospice team so they are involved in all decisions. I think there is a level of comfort knowing that family can discuss options and receive support throughout the process. He told me he feels relief to know that he will have all the support he and his family needs when he passes away.
Just a thought. As Sassy says, none of us here can really give you an answer to your question. Peege's suggestion of contacting the BLF hotline is excellent.
Hospice have been involved for a while, I’ve asked just to try and get through Xmas. They/drs/hospice are very much saying to me just whatever you want. I think the way they are thinking Caitlyn could lay on oxygen for 3 months, the true amount of pain is unknown, but she will struggle more and more as time goes on. Or there could be a sudden event that takes her or their suggestion we can take control and everyone can be there and make it quick and as pain free by removing the oxygen...
None are decisions I particularly want to make....I will phone the helpline today.. thank you again everyone
I can so understand your need to be with your precious child through Christmas. The only thing I can say is , this is a terribly difficult decision that can be made only by those who love and are closest to her. Holding on to a loved one is our basic human instinct.
When my father lay dying, I wanted him to stay with me. I felt so alone and helpless without him. Lost really. That last week when I sat with him, I held his hand and spoke to him about our happy times together. His breathing was very laboured but he had stopped showing any signs of understanding. Yet, I continued talking to him. The last thing he heard me say was "Daddy, when you feel like you need to, please let go. It's okay. We will be okay. I will be okay." He passed away later that morning.
Somehow, I felt because I had told him that it was okay, he relaxed and departed. And importantly for me, I felt a measure of relief in knowing he was no longer in any pain and I felt at peace. In fact I hadn't seen him look so serene in such a long time. This is just my experience. And everyone is different.
I have no answer as to what you need to do for your sweet Caitlyn. But please know I believe you have done and are doing your very best under extreme circumstances. And I am positive that Caitlyn knows this too.
I am so sorry to read the problem you and your daughter are facing.
whatever you decide will be the right one at that time. It is a hard decision to make, but you will know when the time is right to turn off the oxygen. The quality of life your daughter has- will be paramount for you to consider carefully. May you both find peace.
What a sad dilemma you have, and all I can say is that Caspiana has given such sensible advice. I pray you are able to make the right decision for your daughter. Many blessings xxx
I was very sad reading your post, I am sorry for what you are going through. I wish I had some answers for you. When my mums oxygen was withdrawn her passing was peaceful but of course I can only say about her because I was there . I would have no way of knowing if this was the 'norm'. Your doctors should be able to explain how your daughter would be affected. Will be thinking of you.
My heart goes out to you sweetheart. I am glad you are going to contact BLF and I know with your love, which shines out from your post, you will make the right decision, whatever that may be for your precious darling Daughter Caitlyn.
Please know we are all with you and that you can talk with us any time at all.
I can only add my heartfelt thoughts at the struggle you are going through, both you and your daughter will be in my prayers and am sure you will know when the time comes and make the right decision. Xxx
I just wanted to give everyone an update. Caitlyn remained up and down, no matter how much oxygen we gave her, her o2 levels stayed between 85%-92% then every 3rd day she deteriorated a little more. Dr’s and nurse became quite dismissive and didn't give us much info. I think on reflection they didn't understand what was happening. Caitlyn was at home. On 24th Dec, it appeared that a chest infection had began. Slight appearance of green secretions, and Caitlyn was very sleepy. Caitlyn had a trachy so i did suction any time i heard a rattle which would be quite common for Caitlyn as well. Still she needed large amounts of oxygen but it didn't appear to work no matter how much i gave her i.e. 10litres o2 and saturation her where still 89% when she went on a neb set at 12noon 24/12/17 we could not get her off it and back onto the ordinary oxygen everytime we tried to change over she just keep turning blue. Her oxygen levels continued to drop slowly the rest of the day. 70% saturation then 60% The neb set remained on all this time. At 2 am on Xmas morning Caitlyn’s oxygen levels dropped to 53% we where all with her and within 3minutes Caitlyn passed away. She slept through it all. It was very peaceful and i hope it felt like that for her. The oxygen remained on the whole time and she never at any stage appeared to struggle. Her heart rate was higher than usual but she did not waken. Hospice was there during the day but would not give extra morphine (Caitlyn has been on morphine for years) which i was a little annoyed about as i felt it might've brought her heart rate down. I just wanted to give you an insight into what happened and for any future readers or persons in a similar situation. But most of all to say thank you for your support and kind words. X
Dear, Plbakker, how thoughtful of you to let us know. I just can't imagine what it's like to lose a child, in fact I don't want to imagine it, but I'm so glad that Caitlyn died peacefully, which I feel sure was the case from what you've written, and also that your ordeal in watching her is over. The hospice are experts in good & gentle death so I'm sure if they'd had any concerns at all they would've increased the morphine? Maybe you could ask them about this though, to put your mind at rest for the future. Your words are very reassuring for those here who may worry & wonder about the manner of their own passing, and it's kind of you to think of this and share with us what happened at such an intimate time for your family. Thank you so much.
Dear Pibakker, Even at a time of tremendous loss and sorrow,you and your dear Caitlyn have generously shown us all that the passing of a soul can come about with great dignity and calm and with a sense of peacefulness that warms my heart.May the spirit of Caitlyn fill your heart with joy for ever........thank you
Thank you, it really was peaceful. I was terrified for years what Caitlyn might have to go through. She was so strong I was worried it would be a struggle for her in the end but it really wasn’t. Thank you again x
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